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Wednesday, 12 March 2014

Nocturnal vibrations, electric moons

My bed is full of biscuit crumbs and insulin needles. I guess this is a good sign - a sign that my appetite has once again fluctuated upwards, my weight will soon follow suit (quickly too, this pancreas is a dream). I'm a fad, a yoyo dieter, one week scoffing biscuits the other week biscuits not even entering my conscious mind. Weeks will pass with two measly meals a day, until I wake up one sunny cool morning and find myself craving a second cereal, a second helping at lunch. I have found no correlation to this flummoxing fluctuation in appetite, though i've never been able to pin point every bemusing change in my health, simply because there are so many variables. The only answer is to stay as stable as possible - take every tablet, every nebuliser, wear every layer I should as I go out into the cold, and probably leave an hour earlier than I want to when out in the misty early hours of the morning. A dip will throw everything off course and plummet this equilibrium into chaos, inevitably disrupting the delicate order of things. What could cause a dip? Who knows.

What shall I do? Let's go with everything.

I met a man on the Hammersmith and city line. He very kindly told me as we approached Baker Street, he'll send me a note in the Metro, mentioning how he'd just love to let me have a bite of his fruit and nut bar, then winking. I chuckled, nervously, trying not to do anything seductive to my dairy milk. It was an odd moment, creepily intimate yet witnessed by a packed train of fellow londoners, no doubt looking on expecting to find my mangled and abused dead body on the BBC news the next morning.

I looked in the paper the next day for my love note, nothing.

I can't say i'm disappointed, though last night I had visions of framing it and telling my kids about horrifically uneasy yet quite serendipitous moments that we all encounter on the london underground.

As I was making my home that same evening at around midnight, I looked around the infinite and ghostly carriage as I was sophisticatedly scoffing my KFC, wondering if any of these unsuspecting passengers would find a slightly drunk redhead stuffing popcorn chicken in her mouth alluring enough to write another note in the paper. Londoners are a weird and varied bunch, you never know.

I love the night time. Space and time for thoughts, musings and dreams. It's a darkness to indulge in those moments the daytime has no time for as they're swallowed by to-do-lists and nebulisers, expectations of productivity and desperate clinging for order. The Futurists in their manifesto declared "time and space died yesterday", and in an ironic twist in circumstance, their aggressive declaration of productivity has morphed into an calm acceptance that that productivity has set with the sun, and the night is mine to dissolve into. "Let us leave good sense behind like a hideous husk and let us hurl ourselves, like fruit spiced with pride, into the immense mouth and breast of the world".
My mind is hurling. It's speeding into those immense realms, leaving sense - all good sense behind in my tangled duvet. Reality and my perception of it has been lost in the infinite possibilities of the stars, so much so I worry for my own sanity. The Romantics were obsessed with the power of the imagination and it's ability to catapult you into places and experiences and feelings you couldn't possibly reach. To harness that power transforms a mundane life, often, like Coleridge, trapped within the limitations of the frail human body, and can take you away from a life where you cough every 5 minutes, drown in pills...insulin needles, and are alone.*
"What is the use of looking behind at the moment when we must open the mysterious shutters of the impossible". The Futurists were a bunch of dodgy fascists with very questionable intentions, but I can't help but fall in love with their inexhaustible energy and contagious lust for a better life. If you haven't read the Futurist Manifesto please do, it'll probably blow your mind. They dreamed big, and in the silence of the night my dreams take on an almost similar essence of grandeur, just on a more subjective and personal scale. Boundless and barrier free, these waking dreams travel to the stars and back, carving out pictures of life that sometimes you're almost scared to think of in case you jinx those wishes. I was told I was a dreamer by someone I used to know, and I guess I am, when the realities of life such as hospitals and money are snoozing in the corner. The sun inevitably comes up and suddenly time and space are back from the dead - very real and very alive, there's that ticking clock - inside and out, and all those invisible boundaries we encounter everyday, narrowing our space to explore, to think, to dream.

Some say that gleams of a remoter world
Visit the soul in sleep, that death is slumber,
And that its shapes the busy thoughts outnumber
Of those who wake and live, - I look on high;
Has some unknown omnipotence unfurl'd
The veil of life and death? or do I lie
In dream, and does the mightier world of sleep
Spread far around and inaccessibly
It circles?Shelley, Mont Blanc, 1816 (just before his 25th birthday SNAP. Wait wtf am I doing with my life)

Life in the celestial light of day is slowly catching up - in the next couple of weeks i'll be moving into my own house in East Acton, and i'm proper over the moon! I can't wait to have my own place, my own space to just live and try humorously to be a grown up. No doubt in the not-too-distant-future i'll tell you all my #adultfail tales. Or I may, by some freak of nature, be a natural - the perfect house wifey, complete with marigolds, tea and a Victoria Sponge. (We can dream, can't we... !)
The sunshine, especially this glorious springtime weather, has started to thaw my malaise and incessant procrastination - this week alone i've started the squat challenge, seen the GP about a gym and trainer referral, have cut out fizzy drinks and almost all gluten, and am going to try drink much more water - all things i've been meaning to do for quite a while, instead hiding myself in Gossip Girl and dreaming of Dan Humphry. I'm also on 100% compliance with all my treatment. I seem to have a finite number of things I can do/take, and the addition of mannitol (a mucus loosener, twice a day, bloody tiring) pushed that over the edge. For a while both Tobi podhaler (inhaled antibiotic twice daily) and mannitol seemlessly erased themselves from my routine, and it's been having quite a detrimental affect on my health (as it fucking would). But now, by cutting down the amount of mannitol tablets I inhale each session it's become not so exhausting, completely managable, and leaving time and energy for the Tobi pod. I'm already feeling the benefits. It seems this spring has heralded in a new wave of optimism and determination - and i'm sure the imminent new house and all the freedom, responsibility and possibilities that will arise is to thank, as I will finally hold the reigns to my own universe.

*Dreams such as travelling to distant places, going on foreign boozy adventures, or climbing huge mountains and soaking up sublime views from those unreachable heights are fast becoming just that - dreams. I can't even walk up a flight of stairs without getting out of breath, how could I scale the heights of Mont Blanc (not forgetting carrying with me the complete works of Shelley)? I'm resigning myself to the fact that those arduous delights will have to acclimatise not to the reality of high altitude, but the confines of my imagination. "The everlasting universe of things flows through the mind, and rolls its rapid waves, now dark - now glittering - now reflecting doom - now lending splendour..."

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About Me

I'm Laura, 25, & this blog is about me and Cystic Fibrosis. I've titled this blog 'ludicrous bunglings' after a line taken from the novel 'The Castle' by the absurd, dark, and highly amusing Franz Kafka. Two reasons. One, because my reasonably odd life seems at times dictated by a series of doctors whose decisions take me on a whirlwind adventure and I have no idea where they'll take me, a bit like poor K. I empathise with the guy. Two, because it sums up my writing on this blog.
Through this blog I aim to share the whirlwind that living with Cystic Fibrosis can bring, and spill any of my (sometimes coherent, sometimes ludicrous) rambling thoughts!
Happy recipient of a new liver, pancreas and duodenum as of 23/1/13!
Email me: lauraleithtaylor@gmail.com